“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

“Uric Acid levels in the blood can indicate that you’re at risk for gout, kidney stones, or kidney failure. It’s the kidney’s job to filter uric acid from the body. A buildup means the kidneys are not doing their job well.”

For the first time ever – and I’ve had Chronic Kidney Disease for nine years – my uric acid levels were high. Why now? What could this mean? I already know I have Chronic Kidney Disease. I haven’t had a kidney stone in nine years and was unaware of having that one until my nephrologist told me I did. Is it gout?

“URIC ACID: a white odorless and tasteless nearly insoluble acid C5H4N4O3 that is the chief nitrogenous waste present in the urine especially of lower vertebrates (as birds and reptiles), is present in small quantity in human urine, and occurs pathologically in renal calculi {A little help here: this means a concretion usually of mineral salts around organic material found especially in hollow organs or ducts} and the tophi of gout.”

Back to gout, in SlowItDownCKD 2016, I wrote a little bit about one of the causes of gout: purines in our diet.

‘Purines (specific chemical compounds found in some foods) are broken down into uric acid. A diet rich in purines from certain sources can raise uric acid levels in the body, which sometimes leads to gout. Meat and seafood may increase your risk of gout. Dairy products may lower your risk.’

Tumor lysis syndrome — a rapid release of cells into the blood caused by certain cancers or by chemotherapy for those cancers

Also, you may be monitored for high uric acid levels when undergoing chemotherapy or radiation treatment for cancer.”

As far as I know, I don’t have an inherited tendency toward high uric acid levels. Nor do I have hypothyroidism, take immune-suppressing drugs, niacin, or vitamin B-3. We already know that I don’t drink alcohol or eat purine rich foods, and have CKD. I’ve never been treated for cancer, so what’s left?

Hmmm, I do take a diuretic, am obese, and have psoriasis. Wait a minute. I thought diuretics helped you reduce the amount of water and salt in your body. Now they may cause high uric acid? How? Drugs.com at https://www.drugs.com/health-guide/gout.html helped me out here:

“The kidneys do not excrete enough uric acid. This can be caused by kidney disease, starvation and alcohol use, especially binge drinking. This also can occur in people taking medications called diuretics (such as hydrochlorothiazide or furosemide).” Time to speak with my doctor about this prescription, I think.

“In gout, uric acid builds up in the joints and tissue around the joints – often the big toe – and forms needle-like crystals, which can cause sudden episodes of intense pain and swelling. If left untreated, gout can become chronic and lead to joint damage. In psoriasis and psoriatic arthritis, uric acid is thought to be a byproduct of rapid skin cell turnover and systemic inflammation.”

That also explains what gout is, which I’d neglected to do. Something kept nagging at my memory (oh, to have a clear memory without the nagging for a change.) Got it. It was in SlowItDown 2016:

“Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association:

“’Higher weight is associated with higher uric acid levels in the blood, which therefore increases gout risk,’ says Tuhina Neogi, MD, PhD, associate professor of medicine at Boston University School of Medicine.”

That strong connection between inflammation and weight leaves me speechless. It seems so transparent, yet I somehow manage to forget it repeatedly. Ugh!

Book news: In honor of my first born’s birthday, my miracle (I was considered a really old first time mother back then), my sun-up-in-the-sky (That’s the translation of her Tibetan name), all my kidney books will be reduced in price by 20%. as of May 6th. Go to Amazon.com and/or B&N.com and then thank Nima for the present.

Bunches of people and groups have been sending me notification of how much they like the blog. Rather than waiting for the following Monday to acknowledge their likes, I’ve been thanking them on the Facebook page (https://www.facebook.com/WhatHowearlyCKD) which also automatically posts it on Twitter (WhatHowEarlyCKD). So, if you’ve sent me a message saying you like the blog, see your name in print there.

I’ve been unhappy about the misspelling of names in the blogs. What I missed is that while I was obsessing about that, I haven’t been catching editing errors. Not good for an editor. Last week, I wrote “Mother’s Day and Mother’s Day,” instead of “Mother’s Day and Father’s Day.” Errors happen, but I proofed the blog the usual three times! Thanks for reader and friend, Amy Vlasity, for catching that. As for me, I think I’ll start drinking one of my two cups of coffee a day before I start writing the blog.

The findings were presented at Kidney Week 2011 by researcher Dr Erdal Sarac. He concluded: “This study reveals a high prevalence of gout in patients with CKD. Male sex, advanced age, CAD, hypertension, and hyperlipidemia were significantly associated with gout among CKD patients.”

In case you haven’t got a copy of my book handy, I’ve included a small glossary defining the terms in that last, information packed sentence –

CAD: coronary artery disease

gout: particularly painful form of inflammatory arthritis characterized by a build-up of urate crystals in the joints, causing pain and inflammation

hyperlipidemia: high cholesterol

hypertension: high blood pressure

urate: A salt of uric acid

One disease, CKD, can be implicated for three others if you also have gout. When I wrote about being careful what drugs your dentist gives you because you are already medically compromised by simply having CKD, I didn’t know that gout is also somehow in the mix of being medically compromised. I have hyperlipidemia and hypertension and CKD. True, I’m not an older male but should I become more viligant about any hints of gout? I saw the pain my friend endured and don’t want that for myself.

I would have to be careful about my food and beverage intake. Oh, wait, I’m already doing that by following the renal diet. In both, you are urged to cut back on alcohol and drink more water instead. Purines are a problem, too, but then again I am limited to five ounces of protein (a purine food source) per day. Hmmm, avoiding sugar-sweetened drinks may help. Say, with CKD, I have to watch my A1C (how the body handles glucose or sugar in a three month period) so that I don’t end up with diabetes. That means I’m watching all my sugar intake already. I see fructose rich fruits can be a problem. But I’m already restricted to only three servings of fruit a day! Oh, here’s the biggie: lose weight. Yep, been hearing that from my nephrologist for four years. To sum up, by attending to my CKD on a daily basis, I’m also attempting to avoid or lessen the effects of gout.

This is getting very interesting. I also take medication for both hypertension and hyperlipidemia. Are they also helping me to avoid gout? It seems to me that by treating one conditiion (or two in my case), I’m also treating my CKD and possibly preventing another. It is all inter-related.

Depending on what stage of chronic kidney disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.

Studies confirm that keeping your blood pressure in check can help slow the progression of kidney disease, especially if you have diabetes and/or proteinuria (protein in the urine). According to the National Kidney Foundation (NKF) guidelines, you should keep your blood pressure at or below 130/85 if you have kidney disease, and at or below 125/75 if you also have diabetes and/or proteinuria.

If you have diabetes, tighter management of your blood glucose level can help slow the progression of kidney disease. It is important to keep your hemoglobin A1c at less than 6.5% or at the level established with your doctor, and closely monitor your blood glucose to avoid hypoglycemia. Ask your doctor or diabetes educator about your diabetes treatment goals and options.

Both my daughters and Bear are ill right now, thankfully none of their illnesses CKD related. That doorway in the picture? I like to think of it as the doorway to health. It’s my way of reminding myself that you (and I) can help ourselves when we’re ill.